Sunday, June 24, 2007

How can a bad attitude make you sick? The very average Marve and his very average family reveal this knowledge to us with the help of Doctor Thomas and a series of bad-attitude afflicted characters. If anything, we can learn to avoid getting "ticked" off like poor ol' Joe!

Friday, June 22, 2007

Blogging about my brother's cancer isn't always fun. But I try to keep a positive spin on things to get through each day, especially thinking about what he might be going through. So if you notice random musings, and oddball posts, it's not because we stopped "doing the sarcoma thing" here in the neighborhood, but because sometimes, you just want to laugh... at least I do... I hope you do too? Posting might also be a bit sporadic and subject to fits of inspiration or downright blogger fatigue. But check in daily, or nightly as posts might get updated later in the day. After all, I do have a full-time job that luckily, forces me onto the internet almost 8 hours a day, so during my in-between rest time, is blog time! The least I can do for my Moshura, as I can't be there everyday to make fun of his weird smiling mouth twitch and his silly old school breakdancing... ask him to do the Snake..the Running Man...the Cabbage Patch...oooh, the Pop-Lock, or the Centipede... hee hee, nevermind, he'll have to go to the Chiropractor if he does the Centipede. Happy Friday!

Thursday, June 21, 2007

Or is it Machin's favorite? I don't remember, but I do remember thay y'all couldn't get enough of Legolandia! And I still haven't been there... I heard through the grapevine that someone wanted to go for their birthday??? Hmmm... That's an idea... Anyway, grab on to your spiderman chonies and enjoy the movie!

Tuesday, June 19, 2007

I was wondering, do you guys go to Yoshinoya every day after radiation? Cause I know that's what Moshura loves... Have you had your fill yet? In case you haven't, there's a PS2 game based on the Yoshinoya experience especially for you Moshura.

Anyway, I listened in to the teleconference by CancerCARE. We actually broke a record! There were 2,370 people on the call from places allover the U.S., Australia, Brazil, Kenya, Pakistan, the U.K., and Samoa. Below is a short summary of the 1 hour workshop.

Susan Leigh, survivor and consultantLived through 70s when cancer resources were scarce. Old-school way was to be cure-focused. Not enough though! Learned best advice from social worker colleagues: Hope in cancer is not just about finding a cure, but looking beyond the disease, because cancer recurrence and chronic illness happens and being hopeful has to take those challenges into account.

Keith Bellizzi, survivor and consultantBeing a cancer survivor can add another dimension to one’s identity. The world can sometimes be all about cancer. Many try to find meaning in their cancer experience by asking questions about why they became ill (called “meaning-making”), making experience less overwhelming and more controllable. Cancer can happen to anyone, disease doesn’t discriminate. People constantly tell cancer patients, “Be positive”. These people can be annoying!! People are well-intentioned, but being on an emotional rollercoaster daily challenges the Stay-Think-Breathe-Be-Positive scenario. Being realistic is better: It is okay to be sad! A realistic appraisal of experience is part of healing process. Many definitions of hope: Hope is expectation that event will turn out for the best. Hope is when there is one more chance at a cure. Hope is living life without fear. Hope comes from faith. Hope comes from individual overcoming odds. Above all, hope emphasizes active engagement in life, and is an attempt to focus energy on wellness, and focusing on the now to make life better.

Suzanne Lechner, psychocial supportRecommended exercises such as writing, not on a computer, but notebook handwriting where you write down thoughts and emotions, from start to finish, don’t edit self, don’t edit penmanship or care if ideas are profound or silly, the point is to write out emotions to encourage clarity of thoughts in self. Goal building exercise: Make 3 columns, list “Who do I want to be”, “Short term strategies”, “Long term strategies” and map it out! Make a plan for how to reach of these life goals. Balance being optimistic and realistic. People want to see you show a fighting spirit, and it is good to believe that you can beat this. On the other hand, you must deal with uncertainty daily! Acknowledge your uncertainty about the future. It’s okay to be both + and - , these two feelings are normal feelings and can co-exist in that great brain of ours!! Allow these opposite thoughts to work together. You are entitled to worry. Survivors are wiser about the world. There is no pressure to be + all of the time… Even when feeling sad, angry, discouraged. Putting on this mask is called, “tyranny of positive thinking” and involves denying normal emotions. Eventually, the burden of dealing with real emotions multiplies when cancer survivor has to deal with them in secret, behind a false smile. Research shows that people who don’t get stuck in one particular mood are the ones who increase survivorship…it’s okay and good to feel whatever your feeling, just don’t get stuck, and if you are honest, you’ll know when you have to get “unstuck” and seek help around you.

Q&A followed: Most important one I thought is as follows from a woman with cancer…

When her cancer treatment ended, her family thought cancer was over. Families and friends don’t realize that once radiation therapy or chemotherapy ends, a new process begins such as checking for spread or metastasis and anticipating future appointments. While everyone else is anxious for cancer to be gone, stress and worry about the future, checking for daily lumps, bumps and bodily weirdness looms daily over cancer survivor. Cancer survivors worry that they may not get support from friends and family as they were getting before during treatment. Families could plan ahead and be mindful of cancer survivors’ anxiety and worries.

Monday, June 18, 2007

Okay, so maybe Moshura's pecs and, er, pants don't look quite as tight but the spirit of el Santo is with you this glorious Monday... and I just couldn't find any other superhero to replace that seizure-inducing father's day post below. Hope you have a good Monday after your radiation appointment. Let us know how it goes!

Saturday, June 16, 2007

Friday, June 15, 2007

I think we've all have tried to wrap our brains around the idea of what Sarcoma actually is. Well, there are many kinds that start in different parts of the body. The word sarcoma is derived from the greek meaning "fleshy growth". And a growth it is! Sarcoma is a very aggressive form of cancer. The tumor started in Marco's right calf muscle, which had to be removed with surgery. The tissue surrounding the tumor also had to be removed and the area now requires daily radiation treatment to kill off any lingering cancer cells. There are many types of sarcomas. Learning about them can help us find ways of beating this cancer and helping Marco through this.

Here are several types of the cancer and the site where they often originate:

Wednesday, June 13, 2007

So I'm no fan of conference calls. But when I saw that CANCERcare.org was holding free telephone education workshops over the phone, I thought hey, why not? I am a big fan of rolling out of bed, sipping my coffee in pajamas while browsing the morning headlines online. Dialing into a workshop over the phone couldn't be easier.

I signed up and am scheduled to listen into CancerCare's Fifth Annual Cancer Survivorship Series: Living With, Through and Beyond Cancer. The call will take place on Tuesday, June 19th, from 1:30 to 2:30 pm Eastern Time. All you have to do is register here: http://www.cancercare.org/get_help/tew_signup.php and select the workshop on the bottom of the page (I missed that step and a real person actually contacted me to let me know to add the workshop! cool...)

This is the program outline:FINDING HOPE AND MEANING AFTER TREATMENTThe Survivor PerspectiveOverview of Meaning and Hope in the Context of Cancer SurvivorshipWhy Do People Search for Meaning and Hope?What the Research Tells Us About Meaning Making and Hope in Relation to Health OutcomesHow to Balance Staying Realistic and Being Hopeful/Optimistic at the Same TimeA Few Thoughts on the "Tyranny of Positive Thinking"Concluding Recommendations

And these are the featured speakers:Susan Leigh, BSN, RN, Cancer Survivor, Cancer Survivorship Consultant;

Keith Bellizzi, PhD, MPH, Program Director, Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer Institute, NIH, DHHS

Tuesday, June 12, 2007

That's why I think Moshura should get a gold medal for being great thus far! Dealing with cancer is not easy. Going through surgery and the daily pain is awful. But we are all here to try and make it less challenging. Anyway, I'd like to welcome all of you to the inauguration of this blog. Please chime in whenever you want, about serious things, about silly things, anything goes. We are all going through Moshura's cancer together and I hope we can stay on track with the important things so that we can help Moshura get through this. So go ahead, vent, laugh, joke, frown, jump, fall, I don't know! You know you like to waste time! So get creative, it's all yours!! And encourage family and friends to visit the neighborhood often! Lotsa' love, your host... in a land far far away... The Cow in a Blanket... That's what Machito called me last night...wahhh!! Could he tell over the phone I gained 10 pounds!?!

Our New Blog

What is Soft-Tissue Sarcoma?

Soft tissue sarcomas are cancerous tumors that originate in the soft tissues of the body.

These tissues include muscle, fat, blood vessels, nerves, tendons and the lining of the joints. Marco's sarcoma started off as a tumor in his calf muscle in December 2007. The tumor was surgically removed, then treated with radiation.

The cancer later spread to his lung area, the tumors were also surgically removed, his body treated with chemo. He had three more tumors in his lungs, which they tried to shrink down with chemo.

Doctors had ruled out any more surgeries after chemo but they finally agreed.

On March 15, 2010 they removed the three tumors from his lungs, a section of the lung and diaphragm and three sections of ribs. Marco was in intensive care for over a week fighting an infection.

A CT scan showed worrisome signs that the cancer was back and it was confirmed with a PET scan.

Marco went through the maximum number of chemos to try to shrink that tumor. The tumor was not being responsive to the chemo in the shoulder area and there was a new tumor discovered near the aorta that was showing some response.

On Jan 15, 2011 Marco started 6 weeks of radiation aimed at his chest area, 5 days a week 30 min a day before surgery options were put on the table again.

After much debate, surgery was completed March 28, 2011. Marco underwent a painful recovery at home, only to discover over the Labor Day weekend that the sarcoma has spread to his brain.

Marco had brain surgery September 2011 to have the brain tumor removed. He also completed radiation to the operated area. On October 2011, Marco exhausted all of his treatment options at City of Hope. Marco entered home hospice care.

On March 3, 2012, Marco passed away at home surrounded by his family. You can read the posts and archive to read his story.